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Systemic Juvenile Idiopathic Arthritis (JIA) is an inflammatory disease that rarely occurs during childhood. It is associated with high morbidity and characterized joint pains and joint deformities accompanied by recurrent fevers, as well as rashes along with other characteristic features like generalized lymphadenopathy, hepatosplenomegaly, and serositis.

A pilot study was conducted using the observational registry to estimate the feasibility of studying the comparative effectiveness of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus treatment plans (CTPs) for Systemic JIA. In the CARRA Registry, untreated systemic JIA patients were enrolled and started with one of 4 CTPs which were decided by the treating physician and patient/family (glucocorticoid [GC] alone; methotrexate [MTX] ± GC; IL1 inhibitor [IL1i] ± GC; IL6 inhibitor [IL6i] ± GC). The primary outcome of clinical inactive disease (CID) without current GC use was evaluated at nine months. Trial registration- clinicaltrials.gov NCT01697254; first registered 9/28/12 (retrospectively enrolled).

A total of 30 patients were recruited at 13 sites, eight patients began to have non-biologic CTP (2 GC, 6 MTX) and 22 patients started with biologic CTP (12 IL1i, 10 IL6i) at the onset of the disease. The similarity was noted between CTP groups in regards to demographic and disease features. CTP choice seems to segregate by site preference. CID without GC was obtained by 37% (11 of 30) including 11/22 (50%) starting a biologic CTP compared to 0/8 starting a non-biologic CTP (p = 0.014). About four serious adverse events were noted-: two infections, one appendicitis, and one macrophage activation syndrome.

The CARRA systemic JIA CTP pilot study revealed successful implementation of CTPs using the CARRA registry infrastructure. A more extensive study using CTP response to better determine the relative efficacy of treatments for new-onset systemic JIA is now started.

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